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Posts tagged freedom
Changing Perceptions

CrutchIt’s funny how perceptions change over time. Priorities shift as experience affects your perception of life. For years after my injury, I hated being offered help, especially for something that I only had a little trouble with. I was fighting for my freedom, and it was really important for me to do things for myself. Things like opening doors and going up ramps. I recognize that those are the ones that look extra hard, but they’re really not, and I resented the people who were just trying to help.

After a while I realized it wasn’t really the people I hated. It was the fact that I needed the help in the first place, and those thoughtful bystanders were just the physical representation of my disability. Of course, knowing that didn’t change those feelings. At least not overnight.

But the other day I was in Noodles & Co, and a nice guy jumped up to grab the door for me as I walked out. Funny. No resentment. No self-loathing. Just gratefulness. And a lot of relief. I even joked with him. “These doors are so heavy. Who are they trying to keep out?”

So what’s changed? Did I grow up? Or did I grow out of it? I think I’ve just realized I have nothing to prove – to the world or to myself. And the fight isn’t worth it when the prize is sore legs and a sour expression.

I had a similar revelation last year about using my chair more often. And to be fair, I haven’t resented anyone who’s opened a door for me in a while, but every now and then I’m struck with a then-and-now moment like that.

The way I thought before wasn’t exactly wrong (I’m not sure it was healthy for me but it wasn’t wrong). I needed those moments of self-sufficiency. Independence was important to me at that point in my life. But I’ve lived longer now, I’ve done things I hadn’t then. Different fights are important to me now. This is one I can leave in the past.

So next time you see me, feel free to run ahead and open that door. I promise not to bite your head off.

A Step Back to Roll Forward

Our new houseOver the last few months I've felt myself slowing down. I'm only 27, but ADLs (activities of daily living) seem to take a lot more work, chores are anticipated with a physical kind of dread, and at the end of the day, I'm exhausted after doing nothing more than living. After six years, I think my body is finally tired of yelling at me and has decided to strike until I agree to more reasonable working conditions. I'm not a weakling, but I'm also not a hoss. No extreme sports for this bookworm, please. But when a spinal cord injury laid me out three months before my wedding, I worked my butt off in order to walk down the aisle. And after that, I just sort of kept going on the same way. I stuck my chair in the basement, determined never to pull it out again. That lasted for a couple years until I got pressure sores on my feet. The only way to get rid of a pressure sore is to stay off of it and give it time to heal. Well, it's pretty hard to walk and stay off your feet at the same time, so I caved and brought out the chair.

It felt like a cop out. I mean, I'd spent all this time and energy getting out of the chair and there I was plopping back down at the first little setback. This was totally not true – just another lie I believed. I really did need to get off my feet to heal, but it felt like a step back. What I didn't tell anyone was that under the frustration and depression was a profound relief. Suddenly my feet didn't hurt, my knees didn't crackle and my back didn't ache.

So I started to use my chair for getting around large places like airports and zoos. But it still went in the basement when we got home. After all, I only needed it for long walks, right? There's nothing shameful about that. Except there shouldn't be anything shameful about using my chair at all. Looking at it now, I can't figure out what I was fighting against. Was I trying to prove something? I think I was trying to show myself that I wasn't less than I had been. And now that I've done that maybe I can focus on what's best for me.

The chair makes my life easier. Why would I balk at using just another kind of tool? I buy Pampered Chef stuff all the time because it makes my life easier. I don't say “well, I'm not going to use a knife to cut my vegetables because I want to prove I can do it without”. And then what? I gnaw an onion into submission? See how silly that is? Now that we have a new house with wide doorways and wood floors, I can get around without a moment's hesitation. I don't have to struggle up a flight of stairs to get to my books (halleluliah!). And guess what? I have a lot more energy throughout the day. I can get chores done and still have the umph to sit down and write. I'm not giving anything up. In fact, I'm gaining something. It's called freedom.

It's taken me six years to admit it, but I don't want to walk everywhere. I get around my house with a weird mix of walking, rolling, and crawling. I know it looks odd but it works for me. Y'all are probably thinking “Why was this so hard to admit?” Well, I'm pretty stubborn by nature and sometimes you have to beat me over the head with an idea a couple times before I'll even consider it. This was one of those times. And I find clarity when I write my thought process down, so you get to experience the inner workings of my mind. Lucky you. But in writing this post I realized I'm not trying to justify my choice to you. I'm trying to convince the girl I used to be that it's all going to be okay. That poor young woman who ached to be up and walking for no other reason than to say she could. This is for her.

 

I promised y'all an update on the new project I'm working on, but after starting it I realized it's going to take a lot more work than I originally thought. Research! And interviews! So I'm postponing the announcement until I've got a better grasp on my timeline. I know, you're sooo disappointed, but I'll have to make it up to you later.

 

Finding Freedom in Disability

There is something very important about being able to do things for yourself. We as humans strive for a certain independence and strength, and the more limited we are, the more important our independence becomes. Those of us with disabilities fight for freedom daily, and when we've won it, we guard it closely. I remember when I was first cleared to go to the bathroom by myself in rehab. Before I realized this was something I'd been able to do for years before my injury, I was so proud of myself. I felt like a person again, not that I wasn't before that, but I had regained some of my humanity. With every little task we learn or recover, every little thing we can claim as our own, we collect another piece of our self-respect. So how do we gain our freedom when our very bodies and minds seek to keep us enslaved? There are hundreds, maybe thousands, of tools that help us find our independence, and since every disability is different, the possibilities are limitless with just a little ingenuity. Wheelchairs give us the ability to get out of the house, sliding boards help us transfer, crutches help us walk. Therapists teach us how to use what we have and regain what we've lost. Service dogs give us more freedom and companionship.

But these tools really only cover physical independence. What about the self-enslavement of our thoughts, the murky doubts that wrap us so tight in lies we can no longer reach for the truth? The lies I struggle with are huge, oppressive ropes that bind and choke me. I'm weak. I'm worthless. I can't walk so I might as well give up. But by dwelling on the doubts - no, the lies - by letting them become the biggest things about me, I'm letting them win. I'm letting my disability define me and my relationships and my life.

The thing is, I recognize that there are things I can't do, I'm not trying to deny that. But I refuse to let the things I can't do control who I am and how I behave. It sounds cheesy to say I have to accept myself, but in the end, that's what it comes down to: knowing there will always be things that I can't do, and choosing to concentrate on the things I can. It's a choice, one that I have to make every day, and believe me, it's not an easy one.

I choose to take pride in the small accomplishments of a day done right. I choose not to get angry when I run up against something that trips me (sometimes quite literally). I choose to ask for help when I need it and not be ashamed of those moments. And sometimes I choose to let the day overwhelm me because I'm human, and I occasionally screw up.

It took me a long time and a lot of heartache to get to this point. It took me even longer to learn that my experience is not the ultimate authority. I can talk to other people with disabilities and learn that they have very different ideas of how to get along. Just because I have reached this conclusion does not mean that it is the end result for every one else struggling in this world. I don't want my words to be read as “Kendra's amazing cure for what ails you”, but I do hope that my journey can be helpful to others who carry around lies. You're not alone. You're not beyond hope. You're strong enough to win. Choose freedom.